In July I went to a Doc to ask for testosterone, thinking I was suffering from severe andropause, causing pains in muscles and tendons so bad I could hardly walk (I'm 40 years old). The pains had grown progressively worse over 6 months. He said it's probably lyme. At first I was very skeptical and declined to do antibiotics. But after researching lyme symptoms and recalling that last fall I had a red-ringed bug bite, I called his office and requested the antibiotics he recommended. Then after about 4 days on amoxicillin I had zero pain, I was up and walking fine! After 4 weeks of antibiotics I stopped. Then about a week later similar symptoms came back, but not as bad as before and mostly muscle twitching.
Now here's the story I want to share. The good Doc cited above charges a lot and I'm still (months later) not sure if my insurance will cover his fees. He's also out of my county. So I looked up a local infectious-disease specialist in my policy. But the visit to this new Doc was totally bizarre. I'd hardly finished two sentences when she suddenly blurts out: "I'm not going to treat you for lyme." She sounded angry with me. Then she said, "You're determined that you have lyme", as if to imply that my health concerns are a psychological disorder. But in fact I'm not determined. All I know is that my first Doc suspects it's lyme, and then after some 4 days on antibiotics, I went from pervasive pain to being fine. And yet even after I told her that, she said evidence against lyme was that I had "no response to treatment". Say what?!
That infectious-disease specialist told me:
1. The list of lyme symptoms is exhausted by: severe nerve pain, visibly swollen joints, and Bell's palsy (it occurred to me later that that might also a list of the symptoms insurance companies cannot deny).
2. Lyme disease is not associated with muscle or tendon pain or with muscle twitching.
3. Some (I believe local) government regulation says any red-ringed bug bite about the size of a quarter (as mine was) cannot be a sign of lyme.
4. Negative lyme tests (my one test was) are absolutely definitive, period.
From my own research, I know that all of those claims are grossly false. I also noticed that this Doc avoided looking me in the eyes. She gave me a list of other possible causes of my problems, but in researching them, none fit the profile. Happily, the symptoms that began to come back have become dramatically reduced, almost to zero, after (and perhaps because of) using a combination of olive-leaf extract, oregano extract, and Samento. The symptoms seem to be progressively disappearing.
Curiously, despite listing other possible infectious diseases that might cause my symptoms, this Doc was not interested in testing me for any of them. She didn't even want to order what would be my second lyme test... one negative test is definitive. I can't seem to make sense of the visit. She just didn't seem like someone practicing medicine. But then what was she doing? How could she be an infectious-disease specialist and yet so misinformed? Any ideas? Similar experiences?
Posted by lymie tony z (Member # 5130) on :
Welcome to lyme disease "WHATEVER"...
I would venture a guess that everyone here has had the same experience with "mainstream medical doctors" we call ducks...
And especially Infectious Disease doctors we call "IDiots"...
It's somewhat surprising you got the first doctor to diagnose you...we all have had to go thru at least eleven or so......
zman
Posted by lou (Member # 81) on :
She does not want to treat you for lyme because lyme is "controversial" and this might get her in trouble, especially if she is honest and desperate patients learn about her. Then she will be swamped with these controversial patients. Controversy arises with diseases that could cost insurance companies a lot of money.
So, even doctors who know better will lie their heads off to protect their livelihoods. That is pretty much what it comes down to and the reason why there are so few doctors who treat lyme like the serious infectious disease that it is.
Posted by whatever (Member # 10234) on :
Thanks for the welcome lymie tony z! Consistent with your observations, my first Doc's focus is "complementary medicine", meaning he's an MD and into alternative medicine. I don't agree with all the alternative modalities offered. But what attracted me there was the offer of hormone-replacement therapy, which it turns out was not the issue.
After the seeing the second Doc described above, I felt like I'd been abused or something. I've never had a doctor visit like that, so I have no way of making sense of it. Doctors usually listen to you. I can't see why treating lyme would be some kind of taboo. I mean, wouldn't it make more sense to treat it sooner than later? If this is about pressure from insurance companies, wouldn't rapid treatment also be the least expensive way to go?
Posted by Carol in PA (Member # 5338) on :
You may not be aware of this, but some insurance companies promise docs a huge bonus if their practice does not diagnose and treat Lyme Disease.
So, if there are a bunch of docs in the office, one doc who treats a Lyme patient will wreck the bonus for all of them.
Hmmm, talk about peer pressure.
I did not save the source of this info, sorry. But I read that the bonus could be between eight and thirty thousand per doctor.
If you should go to a doc who's in that kind of situation, it's likely that you'll get the "run around" in regards to diagnosing Lyme.
Carol
Posted by kelmo (Member # 8797) on :
ARE YOU KIDDING ME?!!! I would love to know if that's true. My LLMD hardly ever reports a Lyme patient. He will put down any other diagnosis,like whatever the rheumatologist said it was (fibromyalgia)
He said that on the east coast bartonella is considered Lyme, but is not on the west coast.
This explains a lot
Kelly
Posted by Takedownthemoon (Member # 9008) on :
Dear Whatever-
Have you considered reporting her to your states medical licensing board?
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Carol in PA: You may not be aware of this, but some insurance companies promise docs a huge bonus if their practice does not diagnose and treat Lyme Disease.
So, if there are a bunch of docs in the office, one doc who treats a Lyme patient will wreck the bonus for all of them.
Oh great! I knew that they would receive bonuses for not referring patients to specialists...but a SPECIFIC bonus for NOT dxing Lyme?!
AAARRRGGHH!!!! Posted by TheCrimeOfLyme (Member # 4019) on :
I had a doc tell me once that "there is no way you could possibly be having lyme disease, otherwise you would be laying on the floor screaming in pain". This was after I was helped into her office because I could barely walk and slouched against the wall the entire time with my eyes closed
because my head was KILLING ME.
Im sorry this happened to you. Please post in seeking a doctor and find someone that can really help you.
Posted by whatever (Member # 10234) on :
Yeah, I've not-too-seriously thought about contacting some medical board. But I'm more interested in moving on. My inclination is that, it seems like I'm staying okay (just minor twitching I can ignore) or getting better with just OTC herbals. If I can do that, I don't need Docs. And if things get worse, I can see the first Doc to get more antibiotics, and just pay him out of pocket.
Interesting that I stopped taking any OTC antibiotics for one or two days after seeing the second Doc last week, just in hopes that she was right. The twitching got stronger and a few of the odd pains I used to have a lot of in my legs came back. Taking the herbals again for a few days has reduced them, with no leg pain now. So far, it seems like Rx antibiotics packed a powerful punch, at first, but herbals either keep things in check, or slowly decrease the problem.
It strikes me that a wise policy might be to NOT tell medical practitioners about my insurance or tell them I have no insurance. Then pay out of pocket and submit the bills myself to my insurance co. The reason being that if you have insurance or who your company is might affect the relationship in a negative way, but only if the practitioner knows. But then there are probably built-in means by which insurance companies make sure a doctor knows who the 'most important party' in the relationship is.
Posted by Cobweb (Member # 10053) on :
Hey Whatever ! from Maryland no less ! Yeah ! You know I almost
Posted by Cobweb (Member # 10053) on :
Hey Whatever ! from Maryland no less ! Yeah !
You know I almost called Hopkins for a referrel to an Infectious Disease Doc thinking they would be the experts-notice I said almost-I am so relieved I got to an LLMD instead.
The sad part of your post is the subject-says bizarre visit-actually it's not bizarre -it's the norm when dealing with DUCKS and IDiots. Jerks
Carol B
Posted by just don (Member # 1129) on :
Whatever,
If I were you,,I would for sure treat this real HARD and fast. The harder the better IF you are getting results. Knock it out NOW while you still can.
IF you have ANY doubts just ask somebody who has been left hanging around lingering in this illness till its chronic,,,THEN no amount of any abx or others can help,,,sometimes. Wanna take THAT chance??? Didnt think so.
You have the best of both worlds before you RIGHT now!!! Seize the chance, see an LLMD, get treated , and get it knocked out and rid yourself of a lifelong scourge of misery and suffering.
Wait and see can equal,,,no returnsville,,,get it done yesterday!!!My 2 cent(pretax) advice from --just don--
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by just don:
If I were you,,I would for sure treat this real HARD and fast. The harder the better IF you are getting results. Knock it out NOW while you still can.
IF you have ANY doubts just ask somebody who has been left hanging around lingering in this illness till its chronic,,,THEN no amount of any abx or others can help,,,sometimes. Wanna take THAT chance??? Didnt think so.
I agree....BIGTIME!!!
Posted by jggrl (Member # 9470) on :
Whatever, I'm so glad you're here and that you're responding to the abx so fast! I agree with the suggestion that you hit it hard and fast...get it out of there so you can be good as new! Posted by digirl02 (Member # 7177) on :
whatever, i sent you a pm... diane
Posted by AZURE WISH (Member # 804) on :
When I was 12 I was told it was all my fault I was sick .... and tons of other bs. I got sick in sept 1987 and wasnt diagnosed till 2000.
Because the lyme got such a hold on me I have been disabled since 2000.
Get to a llmd now. You dont want to find out how much this disease can take from you.
I can't express in words how much it has taken from me over the last 19 years and I hope you never have to find out.
Unfortunately drs just dont want to deal with us. Whether we pay out of pocket or have insurance.
Some drs have had charges brought against them and have risked their medical licesenses to treat us.
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